Enable people to maintain the maximum possible level of independence - principle 4

Imagine for a moment that you despise the colour pink but love green, yet every day, people who are supporting you in a paid or carer role, dress you in garments that include some element of fuschia, bubblegum or fairy floss. Sounds pretty awful, doesn't it?

Now imagine, along with something as seemingly innocuous as being dressed in clothes you don't like, that the people supporting you decide:

where you will live, what you will eat, when you will go to bed

with whom you may socialise

what you may or may not do with your leisure hours

on what you may spend your money or the ways you may control other assets.

People with disability possess no fewer rights around making their own decisions – around independence, choice and control – than do any other members of our communities. Even in situations where people with disability are unable to make informed consent about some aspects of life, they and those who legally speak for them should be consulted and, where possible, have their wishes considered.

And this is where Dignity in Care principle 4 - enable people to maintain the maximum possible level of independence, choice and control - is important.

The United Nations Convention on the Rights of Persons with Disabilities

Australia is a signatory to the Convention. We must ensure that people with a disability have opportunities to reach their potential, regardless of ability. The convention puts front and centre the importance of individual decision-making and the need to respect people's dignity and freedom to make their own choices.

Two clauses (n and o) in the Convention need to be paid particular attention in the context of Dignity in Care Principle 4:

Recognizing the importance for persons with disabilities of their individual autonomy and independence, including the freedom to make their own choices,

Considering that persons with disabilities should have the opportunity to be actively involved in decision-making processes about policies and programmes, including those directly concerning them ….

'Do With Not For' statement of intent

The 'Do With Not For' statement of intent describes very clearly the ways in which Disability Services and its staff will conduct themselves in relation to the client whom we support.

South Australia's disability support system offers people with disability and their families the control and choice that they want. We are committed to providing a better life for adults and children with disabilities and their families.

The information in the statement of intent, though, can and should apply beyond paid support workers to everyone who cares for another.

Choice and control in practice

Take time to understand and know the person - their previous lives and past achievements.

Treat people as equals, ensuring they remain in control of what happens to them.

Empower people by making sure they have access to jargon-free information about what they want or need, about everything but particularly services.

Ensure that people are fully involved in any decision affecting their lives and care, including:

personal decisions (such as what to eat, what to wear and what time to go to bed, what activities to enjoy)

wider decisions about their home, the support they receive or the establishment providing service (such as menu planning or recruiting new staff).

Value the time you spend supporting people with decision-making as much as the time you spend doing other tasks.

Provide opportunities for people to participate as fully as they can in all aspects of life, including work, leisure, socialising and citizenship.

Make sure that you have the skills needed to include people with cognitive or communication difficulties in decision-making. For example, 'full documentation of a person's previous history, preferences and habits' can be used by staff to support 'choices consistent with the person's character' (Randers and Mattiasson, 2004).

Identify areas where someone's independence is being undermined by you or others and look for ways to redress the balance.

Practical services are available to help with principle 4

Disability Services provides ways in which support workers and carers can meet, increase or enhance the capacity of people with disability to retain, maintain or regain their independence, choice and control. We refer you to:

Information sheets

There are over 100 sheets including topics related quite specifically to independence, choice and control.

Checklist for principle 4 – independence, choice and control

Do we ask the people we're supporting what they'd like to do, eat, wear and so on?

Do the people we support enjoy the same level of input to the way their lives are lived as does everyone else?

Are systems in place to ensure that decisions are made by the person being supported or their legal representatives? Have advance care directives been completed? People can write an advance care directive at any stage of life – whether they are young, older, healthy or unwell. It must be their choice to write such a directive, and they must: